Wednesday, August 19, 2009

In the Year Two Thousand . . . In The Year Two Thousand Nine

Me at home on Home IVs Day 2: 2nd Day of Home Workout, post-hemoptysis. More on revised exercises sitch in later bloggies . . . P.S. Who knew that a port, and a tube top, go so well together? Ah, home gym in the corner of my living room, I love you so. I would gladly forego new blue jeans and fancy I-Pod for you anyday. If only the other CFers would all do the same. Sigh . . .

ON TO THE REAL POST:

In the Year Two Thousand . . . In the Year Two Thousand Nine . . .

Lately I've been asked my many Readers to tell more about my CysticGal demographics and specifics. Hard to do when CG is still in the semi-anonymous state that you read here. I'm going to dive on in and just keep using my very secretive, highly strategic pseudonym creation calculation to tell the story of CG. Just so you know, I am only keeping CG semi-anonymous so that if people google my real name for work-related stuff, they don't get this blog. The people in my life know that I'm writing it, and you know, it's really me, CG here. :)

I am going to have to do this in shifts, so everyday I'll add more posts to the "Who Is CG?" section that is rolling out, and then when it's all out there I'll edit it together for your reading ease. Okay...

I am getting more questions about my situation right now, than I am about my situation in the past, so I'm going to tell the story of CG backwards. Those IRL friendly readers may laugh, here she goes again, writing all chronologically-askew. So sorry. It's the way my brain works, man.

Right now, in the year two thousand nine, I live in new england. Demographics: I am 29 years old. I am a Gal. I have CF. I do not have CFRelated Diabetes. I have a history of Pulmonary Endometriosis and have heard varying opinions on whether that is the same thing as catamenial hemoptysis. Either way, I have that too. I weigh about 98 lbs. and I'm 5' 1". I just had my first Port-a-Catheter placed last week. Prior to that, I think I can count 6 or 7 PICC-line placements in my life. Prior to my first PICC line in the year 2000, I had not had a hospitalization since approximately 1988. My health was managed with outpatient courses of oral antibiotics through my late childhood and adolescence.

The meds I take have not changed that dramatically since, I'd say, 1995, other than when I am having an acute exacerbation. In 2005, after moving to new england, I had a year-long battle with catamenial hemoptysis that ultimately resulted in me being diagnosed and treated, very successfully, for pulmonary endometriosis. Recently, I experienced a big bought of catamenial hemoptysis again, and was treated presumtively for pulmonary endometriosis. I hope that this treatment can ironically lead to an up-swing in my health.

As of 9/1/09, my FEV1 is 16%. In May of 2009, my FVC was 31% Predicted (FEV1 22%) after a course of IV antibiotics. Prior to that course, in October of 2008, my FVC was 43% (FEV1 28%) after a course of IVs.

I am single single single. I have no kids and 2 cats, S-Purry^ and B-Kitty^. I have a few close friends and a lot of long-term friends back home where I grew up, which is not where I currently live. I have a lot of really close work friends because I work in an industry where your work and your social life are sort of mixed and oddly intimate. That makes me sound like a prostitute. I'm not a prostitute. Jeeez. This paragraph is going in the wrong direction. I'm a drama teacher. Now the googling stats for my page are really gonna soar though, so I'm leaving it!

Anyway, back to the facts: I have two siblings. One is four years older, CysticLady^. One is 18 months older, CysticSibling^, a boy. My parents are married and live far away from me. My Csiblings also live far away from me.

My sister, CysticLady, has CF and is five and 1/2 years post-transplant. I believe that she and I carry the same CF gene (there are different variations, I believe we have the same one). My sister was transplanted at the age or 27.

My brother, CysticSibling, does not have CF, and I believe that he does not carry CF either.

There is no other history of CF in my family other than possibly a great great aunt on my mother's side who died very young. However, she could have had TB, right? I believe that I inherited my CF gene from my mother's father and my father's mother, but I could be wrong about that.

I am a theatre artist and teacher by trade. The only way I have ever made a living, with the exception of 6 months of nannying after I got into grad school but before I started it, is by creating theatre, working for a theatre, or teaching others to create theatre. But that isn't the topic of this blog, now is it? More on that topic later.

I work full time, though I'm currently on a short leave to attend to my health.

More tomorrow. Love to all,
CG from the CG-at-home-Hospital

6 comments:

  1. Good to hear a little bit more about the life of CG. Keep it coming, but it feels like I've known you for my whole life...if I was born a few of months ago.

    Ronnie

    ReplyDelete
  2. Your an amazing person CG..I realy get a ot out of your posts...loves your thought process..

    Add me on msn if you would like to chat pegson1986@hotmail.com

    soory if this was a double post...darn internet

    ReplyDelete
  3. CG - Thanks for filling in some holes there. I need to look up FVC(?) as I continue my CF education. I know all about PICC lines after my boy's experience (I was the nurse).

    xxoo

    ReplyDelete
  4. FVC stands for Forced (Expiratory) Vital Capacity - in CG terms, it means the percentage amount that a person is able to breath out as compared to the amount the person would breath out for their weight and height in the absence of lung disease. So for example, if I am 5' 1" and 97 pounds, there is is a particular liter amount my lungs SHOULD BE ABLE TO expand, and then release, of air. (I don't know what that amount is, off-hand).

    My FVC is the % of the "known" amount that my lungs CAN ACTUALLY breathe out.

    So you might hear someone say, "I have 50% lung capacity." That means that they have the same tissue amount as your lungs, but their lungs can only work to 50% of the capacity that they should be able to. The person is referring, usually, to their FVC.

    ReplyDelete
  5. Thanks for sharing. I live in New England too. How has the humidity been treating you? How is the port healing?

    ReplyDelete
  6. Your brother is not a CF carrier. The CF genes does come from your mother's father's side of the family and your father's mother's side of the family. I am the only other family member who tested postive for being a CF carrier, although one Uncle of yours was never tested.

    ReplyDelete

Thanks for commenting! Your comment will be posted ! -CG